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Posts posted by lfran

  1. www.genomind.com offers a saliva spit test that will test for your likely response to SSRIS. At least, it did in the past.


    Also, after battling this for years for my son, trying just about everything that was offered, I can say that the very best response was from a clinical study at UCLA that, of all things, is a 4-week attention retraining program. The hypothesis is that OCD is at least partly based on paying too much attention to your triggers.


    The UCLA program is/was based on research in San Diego (http://nas.psy.sdsu.edu/index.php) by Dr. Najmi that showed this was an effective protocol for adults, and UCLA wanted to study it in kids. Totally noninvasive -- you make a list of trigger words and then you do a computer task (sort of game-like, but not really) that actually trains your brain to pay less attention to the triggers. I saw a huge decrease in symptoms a couple of weeks after he finished the program. It can be done at home with a computer and the proper setup. (The UCLA program requires weekly visits, but they said they might be changing that).


    The CUTA people used to offer this program for sale/rent where you could use their technique in your own home. I can't find that reference any more, but if you called them (USA: 619-229-3740) they might be able to tell you more.


    Wishing you the best.

  2. Also, you can stay in the local Ronald McDonald house and that is free (or extremely low cost -- I forget which. Like $10 a day or something?) And it is walking distance to Rothman. And the airfare and lodging can count as medical expenses on your taxes, although you have to have a lot of medical expenses until the deduction kicks in -- it used to be 7.5% of AGI but I think they raised it to 10%.

  3. Have you called the Rothman Center to see if they handle eating-disorder OCD? They are really some of the best in the country. Even though they are in St. Petersburg, Florida, and it seems ridiculous to have to travel to Florida to receive good ERP, that's what many of us on this Board have found out from trial and error. Many of us have tried one or more local therapists only to go to Rothman and have them make more progress in a few days than the local people made in months. Rothman runs intensive OCD programs -- they meet with you every day (or sometimes twice a day) for one or more weeks. They take most insurance and they were wonderful for us, after we had tried 4 local therapists who didn't really do anything.


    I strongly urge that you at least call them and see if they can help. Unfortunately, right now it is spring break time so everyone wants to vacation in Florida and airfares and hotels are high. But prices will go down after the rush, or it may be worth it to go anyway, if they say they can help. I personally would not be enthusiastic about a therapist who knows how serious your child's situation is and who keeps putting you off. And I have personally met with several therapists who were local to us who assured me they knew all about CBT and ERP and they really couldn't hold a candle to the people who really *do* know what they are doing. And it is so sad, because all the literature says this is the gold standard for OCD. Why can't the therapists do it successfully????


    So sad. This is a *!*&% disease. We all know it.

  4. There is a saliva spit test from a company called Genomind that will very quickly tell you if your genetics make you a good or poor candidate for SSRIs and other neuropscyh medications. Here's the lnk. Turnaround is very quick. At least one of the originators of the test has written textbooks on neuropharmacology.


    Sorry -- here's the link. http://www.genomind.com/products/assay

  5. I seem to recall that a lot of people have posted that when their kid's tonsils are removed, the ENTs say something like, "Wow, these are the most cryptic tonsils I've ever seen!"


    My question: does cryptic always seem to indicate bacteria and infection? I myself have very cryptic tonsils, but I have had them cultured (and have even had the tonsil stones cultured -- I know, TMI -- sorry!) and they don't show strep or other pathogens.


    Just wondering about this. Thanks.


  6. I was told to always take the thyroid meds in the morning, as they can keep you up if you take them later in the day. Also, take away from calcium and similar supplements (probably Mg/Iron/Zn, is my guess) as that can interfere with absorption.



    We are taking the generic, I'll call and ask
    To switch. DS is on 50mcg, we'll see what happens. Last night he was still awake at 2 am so it might have had an effect already since we haven't changed anything else.

    I'm still trying to understand how all this works. I'm still on the prologue of the HE book.



    Just a thought, but maybe pandas kids need to stick to the start low and to slow rule even for these types of meds. Did he always have trouble sleeping? Typically if your thyroid is over stimulated you may have insomnia, heart palpitations, and other symptoms of being revved up. I know I always mend to change in very small incriments because I'm so sensitive to change.

    To a google search on synthroid vs generic. You'll see a bunch of research showing that there can be quite a dramatic difference in what each pill delivers. If he does seem to have symptoms from the med you might ask if the doc would start at a lower dose and increase it every two weeks if needed. If that's not tolerated, try 4-6 weeks. I wonder if there are any pandas savvy endocrinologists?

    When my tsh was in the 60s after I had my first baby, I could t even speak. Words came out but I made no sense. I could t read, count change, find keys or my car in the parking lot, and would find myself in places and. It know where I was or how to get home. It was very scary. It could have been HE but I never got that dx. Just severe thyroiditis. I never had psychiatric issues but my memory and cognitive ability were completely shot. If you have any questions I might be able to help with, please feel free to ask.

  7. DS12 is sick, probably strep. I will be taking him in for a swab, and wanted to ask if anyone knows the CPT code or Quest Test Code for the throat culture where they also test for which antibiotics will be useful. Is it this one?




    Test Code S51120 CPT Code 87186



  8. I second (third) all the advice to line up legal counsel now, just in case. If Beth can't be your attorney, I would definitely put someone else on retainer.


    Also, what are your options regarding inpatient treatment at a place like Rogers Memorial in Wisconsin, or hopefully someplace closer?


    And...since his main OCD is that he won't leave the bathroom, what happens when another family member needs to use the bathroom? Do you have other facilities? If so, and they suddenly became inoperable (because you removed the plug or some other interference), would he get himself out of the bathroom so his younger siblings or parents don't have to go to the neighbors? Would that be a way to start to break the grip that particular OCD has on him (with his therapist's agreement to the plan, of course). Or would it be more likely to backfire?


    So very sorry this is happening. And with your middle child ill with strep, too. Hugs and prayers.

  9. Keep in mind another neuro may not repeat the test for the reason of spinal fluid pressure. You'll want to consider that before choosing. Also. Could you ask the dr to still run the o band test? With lab work they sometimes hold onto the fluid or specimen and additional tests can be ordered after the fact. Is there another dr wou would be willing to call this one and insist?


    Great idea to see if the lab will hold onto the sample. If you can't find a doctor ASAP to call the lab, I would try calling them yourselves to ask, explaining that one of your other doctors wants to look at the sample, and that their clinic will be contacting them ASAP with a lab order. (They'll probably like that -- it's more money for them anyway!)


    Probably any doc can help with this -- even a PCP, if they're willing.

  10. My ds did that backtracking thing once. Turns out he was spelling sentences in his head with each step was one letter as he walked and then the backtracking was either the period or the space. I think the space. He had just had a glutathione push and was on nac at the time. Not sure whether either of those was responsible but that behavior eventually went away. Replaced by others, but not as problematic.

  11. With my insurance, tests are covered even when ordered by a non-covered doctor. Find out who your preferred provider labs are and ask the doctor to sent the test requests to them (ie, Quest or LabCorp, etc, rather than his hospital lab, unless you have verified that the hospital lab is in-network).

    Best of luck! It's wonderful that Dr. Najaar is going to see you!


    Have you considered travelling by sleeping car on Amtrak? They have deals all the time, and maybe if you explain your situation they will have some kind of medical-based fare. That *may* be easier than flying, but will of course take a lot longer and will probably be more expensive. A regular coach seat is much less money, and will partially recline, but may not be comfortable enough for a long journey.

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